Has anyone experienced hair loss with aubagio? My doc wants to switch my meds from Copaxone. She suggested ocrevus and i said no bc I’m scared of pml. So she prescribed aubagio and now that I’m reading up on it it says hair loss is a side effect!
Aubagio : Has anyone experienced hair loss... - My MSAA Community
Copaxone was years ago and I did not like it. I did Lemtrada and loved it. No problems no side effects and after 2 rounds of treatment I AM DONE! Doing great. If I was to go on an oral med it would be Aubiago I suggest for you to go to the educational programs they offer and talk to the people there. go to msbucket put in your zip code find one or two or more you want to go to and go. We use this as a support group and go to programs on all the drugs.Hope this helps.
I was worried about hair loss too before beginning Aubagio. It still sounded like a better option to me than the ones that increase risk of cancer (already runs in my family). I'm JCV positive, so nothing that has PML risk for me.
On top of everything else, I didn't want to have to explain why my hair was falling out to others.
It really was a non-issue. Some extra shedding for a month or so, but only noticeable to me. It did NOT create bald spots or patches, shedding was distributed throughout scalp.
Overall, Aubagio was a great decision. I've been taking it for 1.5 yrs.
I am so thankful for your reply and grateful to hear of your experience with aubagio. I’m back to being excited about starting it. I was thinking them saying hair loss meant chemotherapy full head hair loss. I feel the same as you in that i would not want to have to explain my losing my hair to others
Good Morning and Happy New Year everyone. I don’t have much to add to what was already said. I’ve been on Aubagio for almost 7 years. As said above hair loss was basically a non issue; probably happened more than normal (aside from regular daily hair lose) so nothing noticeable. All stable for me. I wish you the best. ✌️
I have been on Aubagio for 2 years and for the first 6 months I did experience slight thinning of hair on my head but it was not permanent and did not continue for more than a few months. Other than this, it has worked very well for me. No new lesions and very little if any relapses. As long as I continue to eat healthy and get exercise daily I hope that this will continue. I hope it works well for you if you decide to go with it.
Why does your doctor want you to switch? Is Copaxone not working or are you having side effects that are causing problems? If either of those are the reason, you might look to another DMT that might work better for you. But switching just to switch or just because the doctor wants to try something else doesn't make much sense. I have been on Copaxone since 2003 and it is still working great for me. And as long is it is working, both my doctors and I see no reason to switch to anything else, not even the generic. However, I know there are other cases in which Copaxone no longer worked for them and of one case where a side effect (hives) got too much for her, so there was reason to switch to another DMT.
I got switched to generic Copaxone. Bc of insurance. My walking is more spastic and slower. I loved Copaxone at first but i began noticing increased walking probs before switch to generic. I hope this will be a good switch. My doc is great. She wouldn’t switch me for no reason. I don’t have new lesions. She said the MRI doesn’t tell the whole story when small changes are happening. I’ll tell you what she called it in another post bc i have to look it up here on my phone and i fear if i get off this page it’ll erase what I’ve already written
The "skin dents" most likely won't get any better. My doctors explained to me that every time we inject, we kill some cells, so injecting in the same place all or most of the time makes those "skin dents." So my doctors & Shared Solutions (the Copaxone aid service) showed me how to rotate injection sites on my body. I've been taking daily injections of Copaxone since 2003 and I don't have any noticeable "skin dents."
Wow. I’m definitely doing something wrong if it’s been two years and you can see mine already. I rotate the 7 spots but each rotation I must be going back to the same spot. I’ll prob call SS for assistance.
I pray that you do get a DMT that works and fits for you. I know that I've been overly lucky to have my DMT (Copaxone) keep working well for me for all these years. But even in my small M.S. peer group, there are a few people who have had to try 3 or 4 DMT's before finding one that works and fits for them. (Oh, I don't know if you are in an M.S. peer group or club, but if you aren't, you should. There are pains, feeling, & stresses that we who have M.S. have that even our closest family & friends just don't understand. In an M.S. peer group, you can laugh and cry with others who do understand. Through the M.S. Society, M.S.A.A., and/or M.S. Focus, you might find a local M.S. peer groug that fits you and your lifestyle).
I was on Aubiago for over Two years I lost almost all of my hair in the first 6 months but it came back full and curly. I have always had basically straight hair. I like it but it's different. I'm on ocrevus. I tested positive for the up virus but my doctor keeps close watch. I love ocrevus. I've been on it for three years and no relapses. I feel normal. I regained strength in my right leg. I have nerve damage and drop foot. Hardly notice anymore. You should try it. Once every 6 months is great. I've had no side affects.
I'm Pam and am currently on Aubagio after failing Tecfidera, Copaxone and Plegridy. I have experienced hair loss with the Aubagio 7 mg. My neuro said she'd never had a patient experience it before. I also had to start BP medication which is also listed as a side effect. Regarding the hair loss, i began shedding in 3 weeks and it just became worse. My stylist kept coloring my hair lighter to prevent the obvious difference btwn scalp and hair. I did finally get a wig, which is 'nice' because I can have perfect hair in 30 seconds! I don't go out in public w/o a scarf, hat or wig.
I don't want to scare you and this is only my experience. I continue on the Aubagio because it works. My hair is slowly growing back. I'm glad to read that so many haven't had problems. It is a good DMT.
I've been on Aubagio for 18 months. Tecfidera dropped my abs lymphs from 3.2 to 0.4. Copaxone gave me such a severe local reaction after each injection and Plegridy was SO painful. After 6 mo. I told my neuro I couldn't do it any more, he says, "I'm surprised you lasted this long. Most people give up earlier." What??! I hadn't been told that was an option. 😬